Disclaimer
The statements and opinions contained in the articles
of the India Journal of Best Supportive Care are solely
those of the individual authors and contributors, and
do not necessarily reflect the opinions or recommendations
of the publisher. The publisher disclaims responsibility
of any injury to persons or property resulting from
any ideas or products referred to in the articles or
adverrtisements.

We are happy to present to
you the first issue of the Indian Journal of Best
Supportive Care.

As oncologists who are deeply
involved in bringing palliative care to terminally-ill
cancer patients in geographical areas where specialized
end-of-life care is unheard of, we have routinely
come across cancer patients who have lived and
died without their cancer ever having been treated.

At the Ganga Prem Hospice
cancer clinics, when we diagnose patients as suffering
from cancer, under-privileged patients often require
sustained follow-up and counseling to ensure that
they actually visit a cancer centre and get their
cancers treated, if not for curative purpose then
for palliative treatment when the cancer is advanced
beyond the curative stages.

This has made us realize
how challenging a disease like cancer is, not
just for the patients, but also for the medical
persons involved in caring for these patients.
It is not enough just to give medical advice,
it is just as vital to follow up with the patients
and their families, counsel them, and explain
to them that a treatment opportunity lost now
could mean untold pain and misery for the patient
at a later stage. Sometimes, cancer care work
also involves arranging for finances for patients'
treatment and even procuring food and ration for
them as many patients are too poor to sustain
themselves and a cancer is like the last straw
on the camel's back. Our experience has made us
feel that palliative care and supportive care
are not just confined to the last few days of
a cancer patient's life, but have to start at
a much earlier stage.

The Indian Journal of Best
Supportive Care is a small step in the direction
towards putting together the experiences of oncologists,
doctors, carers, counselors, volunteers and even
patients themselves, for an in-depth understanding
of the various facets of cancer care.

Euthanasia is when
a doctor intentionally kills a person by the administration
of drugs. The word euthanasia comes from the Greek
words "eu" ("well") and "thanatos"
("death"). It means a painless and gentle
death. But in modern usage, it has come to imply
that someone's life is ended for compassionate
reasons by some passive or active steps taken
by another person. The discussion surrounding
euthanasia is complicated as there is confusion
about the exact terminology used and it is essential
that these are clarified at that person's voluntary
and competent request.

Physician-assisted suicide
(PAS) is when a doctor intentionally helps a
person to commit suicide by providing drugs
for self-administration at that person's voluntary
and competent request.

Non-voluntary termination
of life is the administration of medication
to end the life of a patient who is unable to
give competent request for this at the time
of administration.

The withholding or withdrawal
of treatment, such as parenteral fluids, at
the request of the patient is not euthanasia.

The administration of
medication to control symptoms, such as increased
analgesia or sedation for a confused and agitated
patient, is not euthanasia as the intention
is the management of the symptom rather than
the intention to kill the patient - the principle
of double effect. When it comes to terminally-ill
patients, it is natural for the subject of euthanasia
to come up. Dr Dinesh Chandra Doval discusses
the arguments for and against euthanasia.

Pro-euthanasia arguments

Legalising euthanasia
would help alleviate suffering of terminally
ill patients. In cases of individuals suffering
from incurable diseases or in conditions where
effective treatment wouldn't affect their quality
of life, they should be given the liberty to
choose induced death. The motive of euthanasia
is to "aid-in-dying" painlessly and
thus should be considered and accepted by law.

In an attempt to provide
medical and emotional care to the patient, a
doctor does and should prescribe medicines that
will relieve the patient's suffering even if
the medications cause gross side effects. This
means that dealing with agony and distress should
be the priority even if it affects the life
expectancy. Euthanasia follows the same theory
of dealing with torment in a way to help the
patient die peacefully and come out of the compromising
situation.

Euthanasia should be a
natural extension of the patient's rights allowing
him to decide the value of life and death for
him. Maintaining life support systems against
the patient's wish is considered unethical by
law as well as in medical philosophy. If the
patient has the right to discontinue treatment
why should he not have the right to shorten
his lifespan to escape intolerable anguish?

Arguments against euthanasia

Mercy killing is morally
incorrect and should be forbidden by law. It's
a homicide and murdering another human cannot
be rationalised under any circumstances.

Palliative care and rehabilitation
centers are better alternatives to help disabled
patients or patients approaching death to live
a pain-free and better life.

Family members influencing
the patient's decision for euthanasia for personal
gains like wealth inheritance is another issue.
There is no way you can be really sure if the
decision towards assisted suicide is voluntary
or forced by others.

Even doctors cannot predict
the period of death firmly and whether or not
there would be a possibility of remission or
recovery with other advanced treatments. So,
implementing euthanasia would mean many unlawful
deaths that could well have been survival later.

Mercy killing would cause
decline in medical care and cause victimisation
of the most vulnerable society. Would mercy
killing transform itself from the "right
to die" to "right to kill"?

How would one assess whether
a disorder of mental nature qualifies mercy
killing? What if the pain threshold is below
optimum and the patient perceives the circumstances
to be not worthy of living?

All
over the world, millions of terminal cancer patients
need hospice and palliative care but cannot access
it. One of the barriers is a lack of understanding
about palliative care and how it can benefit people.

A person needs three things
to be truly happy in this world:

Someone to love and listen
to

Something to do

Something to hope for

The majority of patients
know of their impending death whether they have
been told or not. Patients have physical illness
and yet they are mentally soundthey are
capable of making decisions. Their wishes and
opinions should be respected. They should be listened
to and consulted. They should be allowed to vent
their feelings whether of guilt, anger or plain
sadness. They need a human being-a listener, a
friend, nurse or spiritual guide.

The most meaningful help
we can give any relation or patient is to accept
and contain their feelings before actual death.
If we tolerate their anger even if it is directed
at us or God, we are helping them take a great
step. One of the resident doctors of an Oncology
Department expressed his opinion on hospice care
as, "Senior doctors rarely visit these patients.
They make U rounds-a sheer waste of time on people
who cannot be helped any longer." To work
with and listen to terminally ill cancer patients
requires a certain maturity which comes with experience.
Doctors need to know when not to prescribe medicine
or operate on these patients. Doctors need to
learn that they can help by listening, touching,
praying and simply sharing at an emotional level.

Never use empty words when
conversing with terminally ill cancer patients.

Communicate with them meaningfully.
A terminally ill cancer patient is aware of the
end.

Despite the need for optimism,
no part of the diagnosis should ever be hidden.
Truth can always be delivered with hope since
one is uncertain about the future. I remember
the exceptional case of one of my husband's patients
who had metastatic liver disease. He was told
that his life expectancy was only three months.
The prognosis was so certain, that on the prescription
slip it was written, "Prognosis explained
with limited life expectancy of three months."
The patient came to the Out Patients Department
1 years later carrying the same prescription paper.
He said, "I have been going to my office
since the diagnosis of metastatic liver disease.
I got all my daughters married. My son is carrying
forward my business. I have proved this Doctor
wrong." My husband could not reveal his identity
but he learnt that statistics do not apply to
individuals. My husband shared with him, "Miracles
do occur. You are an exceptional individual. We
can help you live a comfortable life."

Doctors must stop letting
statistics determine their beliefs. Statistics
are important when one is choosing the best treatment
plan for certain cancers, but once the choice
is made, they no longer apply to that individual.
Despite the fact that a patient knows about the
terminal phase of life, he may want to be of some
use to somebody by donating his eyes or kidneys.
This option appeals to some patients as they feel
they can still do something; they feel they can
still live after death or their eyes can continue
to see. It is not surprising that a little touch
of humanity elicits such an overwhelming response.

These patients teach us and
their own families profound lessons on how to
live. Most patients maintain some form of hope
until the last moment. This hope may be in the
form of alternative therapies, trial drugs or
even a miracle from God. The patient should feel
that he will be taken care of and that the palliative
care team will do their best wherever possible.
However false hope of curing cancer should never
be given. Patients are not afraid of death, but
they are afraid of dying because of the accompanying
sense of hopelessness, helplessness and isolation.

There is a time in
a patient's life when pain ceases. The mind slips
into a trance state and the need for food becomes
minimal. This is the time for the 'therapy of
silence' with patients and relations. Unfortunately
many relatives cry the loudest for help at this
time. Those who have the strength to sit by the
side of a dying patient in silence will know that
this moment is neither frightening nor painful
but the peaceful cessation of bodily function.
Some young doctors start cardiopulmonary resuscitation
even with dying terminally ill cancer patients.
Mature doctors watch them die in silence.

Although many developments
have occurred in the field prevention and treatment
of cancer, death from this disease is still very
common. Palliative care is defined as the active
total care of patients whose disease is not responsive
to other curative treatment. It encompasses all
treatment modalities and is aimed at enhancing
quality of life rather than curing of the disease.

Traditionally palliative
care was introduced as the last alternative once
active treatment became ineffective in prolonging
survival. The modern view does not make this strict
conceptual distinction between active and palliative
treatment. Rather the goal is both-life-prolonging
and providing comfort at the same time.

Care
of the terminally ill cancer patient

When a loved one is diagnosed
with a terminal illness, many emotions rock the
psyche of the patient and the family. After they
pass through stages of sorrow, they eventually
accept the illness and are faced with the difficult
decision of holding onto hope for a cure and continuing
aggressive treatment versus palliative care. Maintaining
a holistic view of patients with cancer and helping
them to achieve the best possible quality of life
is critical. Palliative chemotherapy, radiation,
surgery and interventional pain management can
alleviate cancer-related physical symptoms; however,
health-care providers must not forget the patient's
dignity, self-worth and personal goals. After
series of hospitalisations, patients often become
debilitated. As they desire to remain independent
in maintaining their self-care and mobility, they
may become concerned about becoming a burden to
their family. For dying patients, it is most important
to improve their quality of life and relieve their
suffering.

Death certificates (cause
of death, etcNOT cardiac arrest for most
patients)

Autopsy requests

Quality
of life issues in palliative care

Traditional outcome parameters
such as survival, complication rates, recurrence
rate, etc. have long been in use in conventional
medicine. Such outcomes are valid only if survival
is the main therapeutic goal. However by definition,
survival is not the primary goal in palliative
care. How can one therefore assess if the goal
of palliation was achieved and that the patient
was benefiting from it? The only people who can
answer this question are the patients themselves.
Each patient's definition of quality of life is
unique. It is therefore important to treat each
person as an individual and to continue to view
the patient holistically. Controlling cancer-related
symptoms can ameliorate the patient's limited
remaining time with family and friends.

Measurement
of quality of life

Several questionnaires have
been constructed which help patients to express
their subjective perception and evaluation about
whether they feel comforted or not. Assessment
of Quality of Life by definition means a measurement
of overall patient well being and functional capacities
in the somatic, psychological and social domains
in the patient's perspective and not merely the
absence of disease or illness. Now what determines
whether a patient has a good or bad quality of
life? Is it the degree of illness, the course
of the disease, the treatment, the family, or
the type of supportive care? Psychosocial concepts
such as negative affect, experienced social stigma,
social desirability, positive thinking, or therapy-related
expectations are equally important correlates
of a patient's well-being.

There are certain problems
in the palliative/terminal situation that are
not covered in the standard QOL questionnaires
described. These include spiritual and existential
problems, the care situation, family support/social
isolation and specific somatic symptoms. Furthermore,
most standard questionnaires are too long for
those palliative patients who are terminally ill.
To date, most publications have used the STAS
(Support Team Assessment Schedule) and the MQOL
(McGill Quality of Life questionnaire). Secondly
international translation procedures and validation
studies have not been performed for a palliative-specific
instrument. A short form of the EORTC QLQ-C30
for palliative settings and specific scales addressing
spiritual and existential dimensions is under
development.

Although several instruments
have been developed to measure the quality of
life (QOL) of palliative care patients, a rigorous
research study has not specifically asked patients
themselves what is important to their QOL. It
is, therefore, not clear whether these instruments
measure what is most important to these patients'
QOL. Five broad domains were found to be important
determinants of patient QOL:

The patient's own state,
including physical and cognitive functioning,
psychological state and physical condition

Quality of palliative
care

Physical environment

Relationships

Outlook

The relief of pain at the
end of life is the most important issue. Physicians
need to acknowledge and communicate to these patients
about treatment options available which could
improve their quality of life. Providing them
with education about their illness and the different
palliative care choices can make the patients
and families feel empowered to make the best decision.

In summary, the palliative
situation poses specific problems for QOL assessment
and research. Partially these challenges have
been met, particularly in the development of short,
easy-to-handle questionnaires. Measurement approaches
beyond questionnaires would be an additional option
that merits more attention in future. However,
it should be noted that a QOL profile is no substitute
for a patient-physician interaction. Patient-physician
interaction remains the cornerstone of medicine,
particularly in palliative care.